Giving Thanks. 2015.

Goals.

I talk quite a bit about goals in this blog. My daughters' school focuses on having GRIT and perseverance to meet your goals. My Jamberry Team Leader offers us training, leadership insights and encourages us to impress the importance of writing down your goals and making them real. But my first adult Goal Epiphany was thanks to Sensei Jimmy Pedro at Pedro's Judo Club in Wakefield, MA. You've read about this in the past here, but hear me out...

Three years ago, my then five year old was begging for martial arts classes. We had tried karate over a summer and something was missing. As my father (and I briefly) had trained  in judo, I knew the differences between the sports. By watching her on the karate mat I saw immediately that what she needed she would find in judo.

But there was a catch. A big, freakin, chronically-ill-mom-walking-with-a-cane catch...

Pedro's Judo is up thirty-two stairs. THIRTY TWO. Straight up, big warehouse style steps. Dang. We'd been to a children's party there that summer and I knew how precisely  how hard  it was for me to get up there and how lightheaded I was when it came time to drive home.

I sat in the small corner office with head instructor, Sensei Riley McIlwain and watched him do a mini teaching session with my little maniac. Oh man, she glowed. She was elated, ecstatic, like I've never seen over an activity. She was HAPPY.

And I felt fear. Deep, cold gut chilling momma-fear that I would let her down.

In that moment, before I ever heard a word about the importance of goal setting, something crystallized in my mind: I would get Maddie to this dojo twice a week, every week, for as long as she wants to train. Period.

In the years following I've had the honor of hearing Sensei Jimmy Pedro and later, Senseis Kayla Harrison and Travis Stevens speak multiple times on the power of goal setting, goal directed guided imagery and their direct impact on success. Tonight, about three years later, I listened as they spoke again.

The past three years have been rough physically - a few times I've sat in the parking lot after class with my head on the steering wheel, crying while I summoned the grit to drive home safely through a blur of fatigue and pain but other nights...

Other nights I open the windows and sing along with the radio at the top of my lungs as the tears pour down my face. I sing to give voice to the pain and anger, the power and grief and the huge, glorious, hard earned pride that stream from me as I make that short drive.

In three years, my daughters have never missed a single judo class because of my body. Twice, then three times, now four times a week, I stand at the bottom of those steps and take a deep breath. When I get up to the dojo, friends and acquaintances ask me how I'm doing and a select few there truly understand how much I mean when I say, "I made it up the steps; it's a good day."

I never knew what Pedro's would do for me, and it happened before my daughter or I ever stepped foot on the mat. For this and so much more, I am humbly, deeply grateful.

Doumo arigatou gozaimashita, Senseis Pedro and McIlwain. See you tomorrow.

Edited to add...
It dawned on me this morning that this goal has accomplished one more thing: through meeting my goal every week, every set of stairs, I model for my daughters an example of a strong, committed, powerful woman. And that's all I've ever wanted to achieve.

Original posts ...
9/20/12 A Goal Set is a Goal Met

11/22/2012 A Goal Set: Thanksgiving Update

11/27/2014 A Heart Full of Joy

Anger, Politics and Applesauce

Two days after the 2012 US Presidential Election, I have a massive crockpot full of cranberry apple sauce beginning to warm in my kitchen. The apples are all locally grown - some from the amazing people at Farmer Dave's CSA, others picked by my family on a wonderful fall apple picking trip.

Some of you know I cook and bake to cope. I think today may take more than applesauce. Until I had children, I've never been particularly motivated but like much of the country I became deeply invested in the results of this year's decision. 

Well, it's done now. Some of us are elated while some are devastated. What I am feeling is known to my friends but is not the point of this post. Right now I'm focused on the fallout.

Today an already grieving friend was been emotionally and verbally abused under the guise of political expression. She contacted a friend to ask a completely non-political question and her close friend responded with a barrage of hateful texts regarding my friend's political choices. I'm touched by the grace with which my friend stepped back from the contact and leaned on her community to support her in her pain. 

So here is the point of this post.

If you are angry enough over this election to consider attacking or verbally abusing another person (whether they are a faceless online friend, family or a long time friends) take a breath and realize you are in over your head. You need help coping with your anger, grief and loss. Grief is not just about a loved one dying - grief can stem from the loss of hope, the death of a dream.

Please, PLEASE consider contacting someone at one of these resources.

http://www.mentalhealthamerica.net/go/help

http://www.yourlifeyourvoice.org/aboutus/Pages/3WaystoGetHelp.aspx

http://www.healthyplace.com/other-info/resources/mental-health-hotline-numbers-and-referral-resources/

There is never, ever a reason strong enough to abuse anyone. If you are feeling out of control, reach out for help.



Rather than responding emotionally to vitriol spread on the web and in person, consider feeling compassion for a person so clearly unable to control their anger and cope with their grief. Share this page. And maybe bake something. Me, I'm going to go add a bit more brown sugar to the crockpot ... and maybe bake some muffins.

Peace.

Talking with small kids is an amazing way to really think about things. I don't mean talking TO kids, or AT them ... I'm referring to actually having a conversation. When an adult has a chance to look at a situation or a thing through a child's eyes they are often surprised at how different it looks.

During graduate school I had the chance to help a family cope with a complicated situation. A teenage girl was in a bad car accident. Thankfully she was going to be fine but she had extensive facial bruising, and an arm and a leg both in casts. The family's biggest concern was how her grandmother was going to take seeing her in that condition. I can't remember if she had anxiety or heart issues but my supervisor in the Child Life department had the idea that the grandmother bring in the teen patient's little sister for her first visit ... and before the young girl went into the room, I would prepare the child for what she would see. In front of her grandmother.

This gave the older woman a chance to be prepared for what SHE would experience in that room, but through the eyes of a six year old.

"Have you ever had a a really bad bump when you fell? How did it feel? What did it look like?"

"It hurt alot but after a while it got better. And it turned funny colors for a while."

"Well when your sister was hurt in the car, something bumped her in the face. Her face has some funny colors on it and its sore but just like your bump, it will get better."

And on, discussing casts, what they are for, what can we do to make her casts look pretty etc.

By the time we finished, the grandmother had visibly calmed down and was able to handle the visit  as well as the small girl. And I learned an amazing lesson.

Recently my fibromyalgia has been getting much much worse than its been in years. I've been trying to help my children understand the changes and support them but as the pain increased I started thinking about myself. Was I going to slip into grief again? Over-do things in my anger that I have limits?

Suddenly a new lens clicked into place. I remember being a senior (I think?) at Arlington Catholic High School and taking a theology course with Mrs. Lussier. Half the year we studied religions of the world and the other half we discussed death, dying and loss. I went on to study it in more depth during my college and graduate school years. Laying in bed last week, unable to sleep from the pain it wasn't college texts or hospice internships that came to mind ... I remembered reading "On Death and Dying" by Elisabeth Kubler-Ross in Mrs. Lussier's class.

The Kubler-Ross model of grieving talks about five stages one might experience during a grief process. Rather than being a continuum of how one is going to feel, folks actually  go in no particular order. Some people may bounce around between them, skip a stage completely ... even come back and re-experience the stages again when reminded of their grief.

Denial. Bargaining. Depression. Anger. Acceptance.

Click.

Living with chronic illness, chronic pain or a disability is living the Kubler-Ross stages. Not occasionally ... it's living them for as long as "chronic" means. But hold on, that's not as bleak as it sounds.

Sure, it means that some event is going to blind-side you and bring on the loss, the grief, the depression again. You're going to be in denial and over do it and stupidly waste energy you desperately need, or worse, injure yourself. The key is to remember that it is all part of a cycle ... and that some day again you will find peace in acceptance. And while that acceptance won't be forever, neither will the rest of it.

Cycle.

So I found I could do this. I could be sick again and hurt again. Knowing that some day I would be at a peaceful place in my cycle of grief, knowing that some day my fibromyalgia would cycle back into a less painful, more energetic state ... those realizations brought peace to my heart. And I slept.

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

Many prominent bloggers were asked to participate in this simple blog post meme to help spread awareness during Invisible Awareness Week (September 11-18th). I read about it on ButYouDon'tLookSick.com and while I'm not even really a blogger, I decided to do it as well. I post about fibromyalgia because I want others living in pain to know they are not alone.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: I live with Fibromyalgia, migraines and Reynaulds.

2. I was diagnosed with it in the year: I was diagnosed in 2000. I was 24 and a graduate student at Wheelock College.

3. But I had symptoms since: Childhood. My parents spent years taking me to doctors, running tests. A rheumatologist at Children's Hospital in Boston later said he always felt I had fibromylagia but "back then we didn't believe it occurred in children". In fact, most doctors didn't believe it occurred at all. My symptoms changed dramatically in 2006.

4. The biggest adjustment I’ve had to make is: Being realistic. It doesn't matter how badly I want to drive to a friend's house 30 minutes away. I might be able to make it there, but I won't be able to make it home. I grew up in the "You can do anything you want to do" generation ... which is generally true. I just can't do things the WAY I used to. I can still do many strenuous things, but I need to rely on others for help doing things outside my limits and I need to be constantly aware that pushing my limits will ALWAYS have consequences.

5. Most people assume: that I'm a patient, strong mother and a bit of an airhead. I'm none of the above. Parenting with fibromyalgia is the hardest thing I've ever done and it doesn't get easier. Ever. I hate that my cognitive changes make me look like a ditz and lead me to make embarrassing errors. I have a degree in neuroscience for pete's sake, and now I can't think straight. I miss my brain ... and most people assume I can think normally.

6. The hardest part about mornings are: not zoning out at the computer, getting the kids out the door on time. My brain and body just don't move well in the morning and it's a daily fight.

7. My favorite medical TV show is: House! Come fix me you drug addicted maniac!!

8. A gadget I couldn’t live without is: I love my microwavable stuffed cat that warms my feet every night. I also love my Nook - it's so much easier to read when I don't have to strain my hands holding a book open! And my ice packs. I hate them but I can't live without them.

9. The hardest part about nights are: Climbing into bed in pain. It's so much simpler to stay up late staring at the tv or computer but I can't do that AND parent two little girls. Once I get into bed there is nothing to distract me from the aches and spasms. I can understand why people in chronic pain are prone towards self medicating.  

10. Each day I take at least 8 prescription pills and four over the counter meds. I should be taking vitamins with more regularity but I get overwhelmed. I often take more prescription, over the counter and herbal remedies depending on the day.

11. Regarding alternative treatments I: have tried them all (almost). No, I'm not kidding. Yes, I've even tried ______ . Some have helped a bit, some not at all and some have made me worse. I find a balance btwn allopathic and naturopathic treatments work best for me. Sometimes even when something works (eg water physical therapy), the amount of energy it uses makes it impossible. Whatever works for you personally, I'd love to hear about it. BUT if it works for your neighbor's niece's cousin or you saw it on TV or the internet I may seem a little brittle when you suggest it. Please don't interpret that as my being ungrateful for you caring for me - I really do appreciate your concern. I LIVE this though, so if it's out there you can bet I've had it suggested to me. Repeatedly.

12. If I had to choose between an invisible illness or visible I would choose: This depends on the day you ask me. Most of the time I am extremely grateful that my illness doesn't make people stare, doesn't make me feel even more self-conscious than I already am. Other days ... I wish my children could see a meter telling them about my energy level or pain level. It's really hard for them to gauge. I wish the person who glares at me when I legally park in a handicap spot could understand I'm not defrauding the system. I wish people could understand that I don't mean to forget to call, I'm not really a snob for not recognizing them, I really don't mean to lose every piece of paper you hand me, I really CAN'T walk all over the store when you tell me something is on Aisle 1 but its actually on Aisle 16. On THOSE days ... on those days I wish it was visible. Neon would be nice.

13. Regarding working and career: I had to close a thriving business I loved when my fibromyalgia worsened ... and the grief was intense. I was also unable to return to work at the part-time job I had loved. Right now I am focusing on raising my children as best I can. Someday they will be in school full time and will require less of me physically ... at that point I will see where I am in the world and how I can find a place in the workforce again.

14. People would be surprised to know: that I've done many small amazing and exciting things, both before and after my fibro worsened. I've swam with sharks and sea turtles, walked on hot coals, gone sky diving, driven across Costa Rica, been on a ballroom dance team, taken kickboxing and judo, written a children's book... 

15. The hardest thing to accept about my new reality has been: The "I really can't". Some days, I can walk around a museum for two hours ... but other days I really can't drive across town to pick up my daughter at school. It happens at least once a day, sometimes more often, that I am caught off guard by an "I can't".  I like that they still catch me off guard ... I think it means that I still believe I can push my limits.

16. Something I never thought I could do with my illness that I did was: I never thought I could live like this without grief etching itself into every hour. When my fibro changed in 2006 I grieved for the many freedoms I lost. In that time I could not see a future without that heartache ... I knew it would be there but I couldn't SEE it. I still grieve when I run into a barrier that means I miss something precious - a nature walk with my children, driving to see a friend and their new baby - but I've found a peace that I've never had before.

17. The commercials about my illness: The only commercials for Fibromyalgia are trying to sell drugs. They frustrate the hell out of me and hurt my children. When a four-year old sees a commercial for something like Lyrica, they run excitedly to Mommy, full of hope and proud they can give her something to relieve her pain. It hurts their little hearts to hear how thankful I am that they thought of me, but no, honey, that medicine doesn't work for Mommy. (Follow this with talking about how they can bring me ice packs to help or snuggle me when I'm too tired to walk etc.)

18. Something I really miss doing since I was diagnosed is [in my case, since I worsened]: Hiking, walking with my children. Driving long distances, spending the day with friends far away. Running my own errands. Teaching moms how to use baby carriers at the Boston Babywearers meetings and at the workshops I ran. Wearing my kiddos in carriers (this loss was the keenest) .

19. It was really hard to have to give up: My spontaneity. I can be spontaneous in small ways IF I keep it local and IF I have enough energy and IF I don't need that energy for something later on. Wait ... is that actually spontaneous? 

20. A new hobby I have taken up since my diagnosis is: Knitting! I've also learned home canning. It's so incredible to be able to crack open a comforting jar of my OWN pasta sauce, chili or fruit when I'm feeling too weak to make dinner.

21. If I could have one day of feeling normal again I would: I would do something outside with my husband and children. The beach, the woods, I don't CARE ... just walk and run, play tag with them. And I'd drive! I'd drive wherever I wanted to go, to some random town fair or festival on a whim. And then I would come home and cook a fun elaborate dinner. And bake.

22. My illness has taught me: Enjoy the good days to their fullest. Try to find grace, peace and joy in the bad ones.

23. Want to know a secret? One thing people say that gets under my skin is: I hate when people suggest I try something obvious, like a heating pad. Seriously people, this isn't new to me. I also hate when they say, "Does anything help?" I don't know why this one is so hard for me, since it's meant with good intentions. Sometimes I feel awkward when I have to say, no, my story doesn't have a happy ending (so far). Other times I feel so raw from grief or pain that it just feels too personal.

24. But I love it when people: I love it when people remember to park close or offer to let me off near the door of where we are going. I love it when people bring me food or fresh fruit. I love it when they keep an extra eye on my children when I am too tired/sore/foggy to do so. I love it when my kids bring me glasses of water or ice packs without my asking. I love when my husband brings me iced teas and bags of cheetos and doesn't hate me when the pain gets too much and I whiiiiiiiiiiiiiiiiiiiiiiine.

25. My favorite motto, scripture, quote that gets me through tough times is: Work of head and hand is my salvation when disappointment or weariness burden and darken my soul. ~~ Journal of Louisa May Alcott

26. When someone is diagnosed I’d like to tell them: Read the Spoon Theory on Butyoudon'tlooksick.com ... share it with everyone who cares about you. Get a handicap placard - I know you CAN make it all the way to the mall from a far spot, but will you have the energy to do your errands after that? And get back to the car? AND drive home safely? Don't wait until you get stuck, get it now ... you don't have to use it unless you need it. Also, find a way to eat healthy when you are too tired to eat ... and when you fall off that horse, keep trying. Comfort food is ok for comfort but this is life, honey. And you can't comfort yourself everyday. Living on delivery or fast food may be easy but you will feel worse. And quite frankly it starts tasting pretty lousy after a while. Save it for your WORST days. 

27. Something that has surprised me about living with an illness is: that I can get past the drama and keep living, keep doing the things that need to get done.

28. The nicest thing someone did for me when I wasn’t feeling well was: My mom and dad do more for me than I can say but my two favorites are when my dad picks up a big bag of fresh fruit, veggies and milk for my kiddos and when my mom insists I give her a bag of laundry. I also love it when my mom takes me out to dinner or lunch. I love enjoying an easy meal without having to drive/cook/clean etc but most of all I just love her company.

29. I’m involved with Invisible Illness Week because: sometimes having an invisible illness makes you FEEL invisible. And that's a horrible way to feel.

30. The fact that you read this list makes me feel: appreciated, heard, strong.

Circles.

I've never understood our society's weird perception of grief.

Media ogles unique and exotic griefs. Empathetic strangers share, remotely, safely, the griefs of celebrated popular figures. Yet when it comes to our own griefs, our own losses ... we have no blueprint.

During my graduate degree I was blessed to intern with a children's loss/bereavement homecare program. The words of my advisor resonate with me daily.

There are many griefs in our lives ... the loss of a dream, the loss of a love, the loss of someone we hold in our heart. Many folks think "sadness", "death" when they hear the word grief but for me it is less ominous. Griefs can be those disappointments that hurt our hearts, the fear of pain to come...

There are many ways to cope with grief - too many to count - and no one person can judge the healthiness of one over the other.

One thing my advisor pointed out to me that is irrefutable, however, is the impact that grief has on our Circles.

Who is in your circle? Do you have a large family, a few very close friends, a spiritual community? Are you active in online communities? How does your grief affect your Circles?

When grief strikes most people respond in one of two ways ... some reach out to their circles, often even reaching out to create wider support circles. And others close their circles, connecting closer with those safest for them.

For some communication is therapeutic ... the worse it gets the more they reach out, lean on their widening circle. For others communication is draining ... the worse it gets the more the griever needs to just cuddle their children and turn off the phone.

I observed families through many variations on these themes. Over time I began to observe my own habits. What are yours?

When my griefs are wrenching but I can wrap my head around them - miscarriage, a bone graft, the loss of trust in a loved one - I reach out, widen my circle.

When my griefs are harder to grasp - the impact my health will have on me and my family - I close my circles.

I wish we talked more about grief with kids, with each other. I have so many dear friends who want to know what they can do, how they can help ... its especially hard to grasp if you have never closed your circles yourself. I just need them to know that I love them for loving me and that I am doing ok. This type of coping isn't about denial - neither denial of the problem nor denial of our need for support.

I'm not sitting here grieving over my fears. I'm loving my children, enjoying the energy I have. It's scary, not knowing something so big, that will impact my babies. But I know you are there if I need you :)